Against all odds: The story of Dr. Hadija Jilala

Dr Hadija Jilala sees her success as a platform to help people with disabilities rise to their feet and live happily and productively.

Dr Jilala, may we know you?

My name is Dr Hadija Jilala, a firstborn in a family of six, in which three of us have physical disabilities. I am a senior lecturer at the Open University of Tanzania and am actively engaged in changing the lives of people with disabilities.

How has society treated you since an early age?

The question of disability, especially in the wider sub-Saharan African social setting begins from within the family. Where the family’s perspective is negative the outer society leans towards the same even more. But I have always felt lucky and blessed to be born into a caring, God-fearing family where I am accepted, valued, and treated with love.

In the eyes of the society, a person with a disability is looked at differently. In extreme situations, a person with a disability is prejudged as bad luck, a problem, and as an abnormal and less able person. Many people choose not to associate with people with disabilities, even though they may not speak about it openly.

With widespread activism for inclusion and societal awareness of the rights and dignity of people with disabilities, things are substantively better today, though we are yet to achieve the standard social inclusion practice.

Do you have any memories of being discriminated against?

Memories of my school years bring deep feelings. At school, fellow students looked down on me and thought of me as less capable in all aspects compared to them. While in primary and secondary school, there were times I got fed up and felt it was too much of a burden to bear. The infrastructure was not friendly to my condition. On several occasions, I could not go to class when it rained. Sometimes I was immobilised by heavy rains in the middle of nowhere and had to stand alone at the centre of the road and get rained on because I could not run for cover like my peers when roads were flooded. It was believed that standing under trees in the rain attracted lightning.

More so, I have come across people who wanted to make me feel inferior because of my physical disability. I have been denied chances to do things I believed I could do, just because another person felt I could not. It was even more painful when I was openly told: ‘you are disabled; you are not able to do this.’

What has motivated you to take such a deep dive into education?

It had been my long-time aspiration to further in studies. Learning has been something I have loved since I was young. Apart from being a fulfilment of what I love most, my educational aspirations have been diversified into writing. I can look back and say the bitterness of being rejected and disrespected was also a motivation to keep striving. I hold a bachelor’s degree in Education, majoring in Kiswahili, a Master’s degree in Linguistics majoring in Kiswahili, and a doctorate majoring in translation, all from the University of Dar es Salaam.

What’s your contribution to society and people with disabilities?

Growing up with the pains of living with a disability, I greatly desired to be of help to people with disabilities. I have had a taste of their difficulties, and I am all out to bring change. In the year 2018, I launched initiatives to help people with disabilities, especially women and children. This is because women, even without disabilities are at a vulnerable cliff. Things become harder when a woman with a disability has to endure the distresses of both.

Every year I organise capacity-building programmes for people with disabilities to promote their talents and innovations and give them economically viable projects to support their livelihood. Beneficiaries are people with disabilities from learning institutions of all levels alongside those outside the formal education system.

In 2019 I launched Dhahabu Foundation for Children and Youth with Disabilities. The organisation made the empowerment outreach easy. It also widened our coverage possibilities. Through Dhahabu Foundation, I began the Dhahabu awards which recognised and brought to light talents and innovations by people with disabilities, who have no chance in the mainstream competitive circles. These competitions were in themselves empowering, restoring self-worth in the competitors.

We also established November 5 as a national day for recognising the talents of people with disabilities. With the motto, Kipaji Changu, Ajira Yangu, our target was to build a foundation for self-employment through their talents.

Over the years I have championed empowerment programmes for abandoned single mothers, some of whom have disabilities, while others have children with disabilities. We have offered mentorship programmes to restore their confidence as well as a sense of dignity and value. Through the Save me Change Lives programme, we offered equipment for teachers and students with disabilities, specifically wheelchairs and guide canes for the visually impaired.

These have been for me, little ways of making an impact in the lives of people with disabilities alongside the people and families that may be dependent on them. As a task force, our great challenge has been funding, this is the reason we have not had the Dhahabu competitions and awards this year. We look forward to resuming next year.

Do you think people with disabilities are given priority care in events of emergencies?

In my assessment, when disasters, epidemics, outbreaks, emergencies and pandemics occur, people with disabilities are vulnerable and stand at the forefront of the dangers, though their needs are often at the rear end of priority in terms of care and support. This was evident at the start of the Covid-19 pandemic. At the national level, there was no timely and reasonable mention of protecting people with disabilities from Covid as well as the economic and social aftereffects thereof.

On our part as Dhahabu Foundation, we held a virtual event attended by people from all over the world in which we spoke about protecting our less abled persons in times of emergencies, particularly in health-related situations. This was done at the start of the pandemic, and I believe it was eye-opening. We also facilitated a mental health awareness workshop for people with disabilities as most of them struggle with mental health issues, most of which are triggered by the discreet pressures and sometimes discrimination by those around them.

Can you highlight areas of improvement in caring for people with disabilities in Tanzania?

I have been very keen on the affairs of people with disabilities of all genders, age groups and all living conditions. I can testify that things are not as bad as they were, there are marked improvements, but inclusion is not at the levels it is portrayed to be. In most institutions, schools, hospitals, places of worship, entertainment centres, etc., mobility, communication and support infrastructure is not in place. Society is considerably impassive to the needs of people with disabilities because awareness is low. Some children are hidden inside homes, to prevent people from knowing that a family has a disabled child. This denies them their freedom, dignity, and their right of being empowered and supported.

The government, alongside other agencies is doing its best to support people with disabilities. We need more targeted empowerment to recognise and invest in their creativity and innovativeness and trust them in what they can do.